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Friday, April 29, 2016

Last night, I had this gnawing feeling to dig up the medical binders from 1995. Shelbie was three years old. It was the year I started keeping medical reports. This morning, I spent over two hours pouring over test results. Time passes and the details of the past are fuzzy at best but reading all those medical notes again, brought back so many memories. So many things I had forgotten.

It was the same year that Shelbie had a chest x-ray because of continued breathing problems, infections, etc. That report noted that she already had those nodules and calcification in her lungs. Why...I'm wondering now, why the doctors never told me about this. I had the report but that was pre-google, pre-computers- long before I began learning about these complicated issues. I functioned under the assumption that if it was important, they would tell me.

I also found the very first abnormal blood draw that sent us to Primary Children's and one of the world's best immunologists, Dr. Shigeoka. From the age of two...there were striking problems with her CBC. I took a picture and texted it to Dr. G. It was an education to go over the early bone marrow biopsies with the knowledge I have now. It gave me even more clarity that the problems today have been evolving.

This afternoon, again, from out of the clear blue...I got a call from the National Institute of Health. They have made some interesting headway in the study of telomeres and wanted to get updates on the kids. We went through everything that has happened in the past year and she asked if they could do a complete whole exome sequencing on all three kids, myself and my Wasband. This is huge! Pretty phenomenal news! They want to test me and my Wasband for Dykeratosis Congenita and telomere length. They have found two instances where they thought DC was maternally inherited but it actually came through the father. Typically speaking, DC is an X Chromosome disease. They will also focus on Shelbie and try to discover what the heck is going on. From their point of view, Shelbie does not have a completely different rare disease than the boys. It could be that the boys have two completely unrelated diseases and Shelbie shares one...we'll see.

Nothing may come of this but the fact that the leading medical researchers in the Nation are pursuing us is nothing short of a miracle. I have been involved with them off and on but never kept in touch so obviously, something happened to put our family back on the radar. She told me that they have the ability to have results in as little as 8 weeks once they receive our tissue samples. They have already been doing some things with the kids samples we sent years ago.

In other news...quite unexpectedly...I had another birthday. My birthday was yesterday actually, the day of Shelbie's transfusion. I typically don't make a big deal about birthdays especially since being divorced. This year, the kids were amazing. Shelbie decided she wanted to make me a cake. Let's get one thing straight...Shelbie doesn't like walking into the kitchen for any reason! She doesn't bake or cook but she was determined to do this all by herself. Here is the finished cake!

Each of those flowers were handmade by Shelbie and Sam helped out too! It's amazing!

We had a late dinner at Texas Roadhouse...There is only one tradition I have on my birthday and that is eating ribs at Texas Roadhouse. I order 4 ribs and that about fills me up and they are my favorite! I only eat them once a year...my birthday is my big splurge day! ha ha.

Me and Bentley...rare footage of me.

I appreciated the visits by a couple of friends and spending the evening with at least two of my kids. Spencer called three times so it was like he was there! He moved to Provo last night so he was pretty busy and I miss him like crazy!

Thursday, April 28, 2016

Two nurses came. We're a handful. In fact, one nurse was actually the owner of the Hospice company. She didn't stay the whole time, just until we got all the paperwork done, blood draws complete and training on the pump, but the nurse we will have for a couple more weeks, or more, stayed all afternoon. The transfusion itself ended up taking nearly 5 hours but she was here 6 hours!!! Much longer than they projected it would take. Both nurses were great.

Our regular nurse is wonderful! It's so strange to me how the smallest detail seems to be taken care of sometimes, even down to the nurse that will now be spending the afternoons with us once a week. Without a doubt, she was sent from Heaven. I asked her if she was nervous going into a new home and she said she was a little. I said I was a little nervous too having her here. I even told her about all the little plans we had for her, including the channeling of my great dead aunt. She laughed. In fact, the nurse who called to schedule with us told her all the things I had asked on the phone! I'm a dork. I guess it's no secret why I'm still single!

Our nurse has only been in the area a year. She was a single mom in Arkansas but moved to a nearby city after meeting her new husband. Shelbie knew they would get along when she brought her 32 ounce Diet Coke with her! She loves the same TV shows that Shelbie likes and loves photography, crafts...she seems like she could be part of the family! She even has a special needs daughter. She really is so nice and I feel relieved. She is the perfect fit for us. It wasn't at all awkward. Once we had Shelbie situated and had fallen asleep from the premeds, we sat and worked. I did my work and she got caught up on charts. Of course Shelbie had to have vitals every 30 minutes so there wasn't that much down time.

The whole experience was much different than I had imagined it would be. Some things were better, some were not. I was totally relieved to have the nurses here today. I think I could do this just fine alone if I have to. Not the blood draw of course...but getting the plasma drawn, primed and set up for infusion.

Now...the bad news! Dr. G texted me this morning to tell me that Shelbie's IgG level was completely normal. 3 weeks past due, even from the last IVIG. He was expecting numbers more like 200 since she gets sick every single month, a week before she is due for IVIG. I'm not sure if this is just an outlier or a true number. At any rate, it definitely raises some red flags that this is not CVID or at least, not a common form of it. And the big question...why is she sick but immune numbers seem okay? Where do we go now? Dr. G had not real answers. I told him this news felt very discouraging and maybe we are barking up the wrong tree. He felt like maybe they need to rethink this diagnosis as well.

The other wrench is that one of the tests that the Oncologist did last week, came back high; representative of organ and tissue damage from...you guessed it...Lymphoma. What a puzzle. I'm so over the back and forth. I don't think they are considering cancer again right now, it's just so weird to me that some tests still keep coming back suspicious.

So...we are no further along and in fact, it feels incredibly depressing. I can't even speculate really. I'm going to have to do some research and try to understand what this could mean.

Tonight, her abdomen is swollen from the needles and hives are starting. She is also feeling much sicker tonight. I'm hoping for the best but it's not easy.

Oh...During the first little bit, Shelbie took the nurses down to see her studio and while they talked about photography, Shelbie asked if she could offer free family photographs to people on hospice. I was so surprised that she did that but it will be a wonderful thing. It felt like this whole day was meant to be. I know that sounds weird but somehow...everything is right with our world. I hope that they will take her up on this. It would be such a great thing for Shelbie to do.

Wednesday, April 27, 2016

Am I nervous? Yes. Yes I am. Is Shelbie nervous? Yes. Yes she is.She's had a few mini panic attacks.

I had a conference call for nearly an hour with the specialty pharmacist on Monday. He told me he felt he had gotten misinformation about Shelbie's past medical history. I inquired, "Why do you think that?"

"Well, I just can't understand how this medical history can be talking about one single person, who is still alive."
"Ahhh, I'm sure it's correct. Yes, it's quite a history." I replied.
"Are you sure it really took them over 10 hours to administer IVIG and still she had aseptic meningitis every time?"
"That's right. Every time."
"That is insane. No one should have to suffer like that."

He went on to explain the risks involved with Sub Q plasma and how her weekly transfusions will work. The doctor is starting her out at half the dose she has been getting once a month. She will get a dosing every week that will transfuse in over 4 hours and two needles that go in her stomach. So, for four hours, she will have tubing and needles stuck in her gut. Add that up and we are 6 hours longer per month than getting it intravenously. I'm not sure how this is going to be better.

Because of her complicated situation, they have to run it extremely slow. If she gets through 4 weeks without complications they will double her dose and that will mean more than 6 hours of infusion once a week! Ugh.

The Pharmacist asked me if I was nervous to take this on and without a pause, I said, "Terrified."
"WHAT? WHY? After all you've been through? You can do this! You've got this."

I was grateful for his vote of confidence but I'm not sure I have this at all. The Specialty Pharmacist thinks it is mandatory for a nurse to be here at all times, every time, but I don't think that is correct information. I kind of think they will cut us loose after a couple of weeks. He said he will be sending a vial of epinephrine in case she stops breathing! WHAT? Oh dear...I pray I don't have to shock her system into breathing but honestly, I wouldn't be surprised. Since it is plasma from over 20,000 donors, each time can come with different reactions as Shelbie's body reacts with the immunity of all those strangers each month. I'm sure it will be fine. I don't process things as well as I use to or maybe I use to function on ignorance and that made things seem not so bad. Or, maybe it's because I don't think right when I'm tired. Or maybe...it doesn't really matter, it just is what it is.

Speaking of home health, they are sending a hospice company! That'll give the neighbors something to talk about. Just to clarify, Shelbie is not on hospice. They called on Tuesday afternoon just to make sure we knew when to expect them tomorrow. I asked if the nurse would be here during the entire 4+ hours and she responded that that would be the case. The nurse is not allowed to leave. That's weird! What am I suppose to do with a nurse I've never met?

I asked, " So, she's bringing her knitting or what?"
"Well, they just usually do whatever you guys do."
"Really? So, if we watch 5 hours of Lawrence Welk reruns, she's all in? Do I have to feed her? If I am cleaning bathrooms, can I ask her to help? Oh wait, maybe she'll enjoy looking at 23 years of family photos and home videos?"
I thought the nurse on the other end of the phone was going to need some epinephrine she was laughing so hard but I was serious! For reals...I'm not a social creature and sitting around staring at Shelbie and a stranger for 5 hours gives me all sorts of anxiety.

At dinner, we brainstormed all the ways we could make this transfusion the most awkward for the nurse...The winning suggestion was from Sam who suggested we tell her we want to channel my dead great aunt and we needed her help. I'm just kidding...we will play nice. She will never want to leave! I told the nurse on the phone that we will plan to have a little tea party for this week. Next week, we will have a craft day and the week after that, I think we'll break out the adult coloring books. For week four, we are going to paint baseboards! She is going to love it! See...so much fun! It's going to be great. I can hardly wait.

Monday, April 25, 2016

Today, I've been remembering the good old days, back in the 70's when we took family vacations. I shudder thinking that I even remember the 70's. That was long time ago and long before seat belts existed in cars, or maybe they did but wearing them was optional. Apparently, we cared little about our own safety and less for our children's.

Looking back, I have to wonder, with a smile on my face, 'What were my parent's thinking?' Not only did we forgo seat belts in the back seat of the big silver Buick, but they built up the leg room so it was the same height as the bench, and we bounced around back there on a giant, Buick, backseat bed for hours, until we reached our destination.

Before starting any trip in the car, I dutifully made myself notebooks so that I could note every license number we passed and record general activities we did. One task that was always assigned to me was counting tunnels. It seems like such an odd thing but I remember my dad telling me that keeping track of tunnels was always my job. He would announce when a tunnel was coming and I would mark my tally of tunnels in the stapled book of scrap paper. Whenever we went through a tunnel, he would honk the horn until we got out the other side. To this day, when I drive through a tunnel, I honk the horn. It must be a Canadian thing to do because I never hear anyone else doing it...or maybe it was just a family thing we did.

Here we are today, four decades later and I still think about tunnels. Today, it's in a different context. I've been reading a book I found in the Economy section at Barnes and Noble. It's a little out of my preferred genre of literature but it has been fascinating to me. It's called Scarcity. In it, the authors describe what happens when you live in scarcity. One side effect is called tunneling. All you can see is the problem at hand; the scarcity you are experiencing. Living below our means, whether financially, or in love, friendship, time, attention, health etc. we become preoccupied with the deficit. We can't focus on anything else. We develop tunnel vision. All we can see is just a sliver of what is in front of us at any given moment. We can't see a bigger picture.

It dawned on me as I read, that most of my life, I have not only lived in scarcity but existed in tunnel vision. This is especially true of the past 11 years that I have been divorced. In that 11 years, we have been through a lot; two solid years of chemotherapy, bowel resection, pneumonia multiple times, deadly viruses and bacterial infections, bone reconstruction and prosthetics, lumpectomies and the list goes on to unemployment, underemployment...ahhh, it's exhausting to consider. With all of our ups and downs, it's been hard to focus on anything but the fire at hand.

Now, we are acknowledging the ill-effects of tunneling. And while I feel horribly guilty and ashamed of our existence, I'm not sure how I could have done anything different. The truth is, now we are four lost souls. We are simply lost in our tunnel of life. It seems like getting out of a tunnel should be easy; honk your horn! Wave down a fellow traveler or go towards the light...the problem is, I can't find the light. I don't even think there is an end to this tunnel.

My kids are feeling the tunneling effects and I find myself apologizing every day to them. Today after school, Sam and I had to address the fact that he may not get all of his work done in time to graduate in 4 short weeks. He's had to do an extra English class, home school style because he missed most of one semester when he was in 9th grade, due to illness. He has to make up an entire semester of seminary and has 22 days to do that, again because of missed days due to health problems. He has no plans for college applications, a mission, nothing really. Why? It's not his fault, it's because I have been tunneling. Just trying to swim above the current. Trying to run a business, be an employee for someone else's business, feed my kids and keep them alive. That's all.

Sadly though, it's been our whole life. I hear myself telling them over and over...just get through. Do the best you can. Don't worry about that now. We'll figure that out later. It sounds like a supportive parenting role but very ineffective it turns out, at least for the long term. Spencer is feeling its ill-effects as well as he is very under prepared for life in the real world and as a double whammy for him, he now has to deal with his own health issues and try to make a living and get an education, all on his own. It's been challenging and continues to be so, even discouraging to him. He deals with it by avoidance. What can I say, he learned from the best.

Now, I don't share this little tale for pity. It's just an epiphany I had today. It felt so good to just sit my kids down and say, "My name is MOM and I am a tunneler and that is why your life sucks today! Thank you!" It was like my own little 12 step group for the narrow minded, short sighted. It was very empowering to just admit out loud that this isn't the way I intended for things to work out.

But...I promised them, that somehow, if they had enough faith, God would not punish them because of my shortcomings. I really believe that God will make up the differences...at least I hope he will! No, he will! We've made it this far and believe me, it was nothing I did! So, if you happen to be in the tunnel too...be sure to honk and wave!

Saturday, April 23, 2016

There are some days in which I feel I have everything figured out. I feel close to the spirit, I feel inspired and then mysteriously, it all changes and I feel lost and confused. I am in the lost and confused stage most of the time.

I will say this, even during the times when things feel harder than usual, I can still feel the faint whispering of goodness and Godliness in our life.

On Wednesday afternoon, when we were through with Oncology, Shelbie got incredibly agitated and upset but instead of verbalizing her thoughts, she just simmered in them for a good little while. Enough, that when I inadvertently said something that was misinterpreted, everything blew up! This seems to be the norm for me anymore, people misjudging me, not liking the way I handle my life, suggesting I need to do 'life' differently; who knows what is up with that but it's getting to be a nuisance for me.

We tried to talk things out but she didn't understand me and she gave up the dialogue long before I could grasp what she was saying. At this point, we were in the hotel so I told her to sleep it off and I was going to find a park to sit in and do nothing and I would come back for her later. Well, she didn't want to be left alone but honestly, I wanted to be alone because I didn't like the tension between us. But...she came. In fact, she directed me to this obscure park in Downtown Salt Lake.

Gilgal Sculpture Garden. It was actually what we both needed; a Heavenly intervention. The park is tiny but full of interesting sculptures depicting scriptures from the Bible and verses from hymns. It helped center us and calm things down. I was so glad for that. We both had a change in perspective and heart. Mostly I'm glad that Shelbie was able to be calm enough to communicate her fears and worries so I could actually help her carry the burden she feels.

The park is covered in these engraved stepping stones of scripture and song, This one was a good reminder, "See What God Hath Done."

My favorite Hymn- God moves in a mysterious way

This weekend, I am pretty much exhausted. I think I'm just fighting something...fighting with myself right now. That must be it.

Friday, April 22, 2016

Yesterday, we spent the day at the University of Utah Medical Center for Immunology follow up. Things felt a little more settled and even somewhat hopeful. Not so much in the sense that things aren't as bad as they thought, but hopeful that we managed to get through this horrible, acute situation from the biopsy. The doctor was quite happy with how things are improving.

I learned an important lesson while in clinic. Shelbie's white count was nearly triple what it normally is, as were her red cells and even platelets were up significantly. I have seen this happen nearly every month when Shelbie had IVIG. They would always draw her blood before the transfusion and give me a copy. I looked at these normal counts and was happy, thinking that IVIG was really doing a great job keep her counts normalized.

When Dr. S walked in the room, he was a little on edge and nervous. He said he had looked at her counts and was very worried that he was going to have to deal with an angry infection since everything is so elevated. A month ago, her white count was in the high 1's which is extremely low. As soon as he expressed his worry, it dawned on me that I have been making the wrong assumptions. It isn't the IVIG making her counts go up, it's the fact that she gets sick every single month at week 3! It's the virus or bacteria that is giving us the high counts and that is not a good thing. Dr. S set me straight again. We kind of feel she is sick from the chronic Adenovirus she has had for over 5 years. The IVIG quiets the virus but when that runs out, the virus flares back up.

And speaking of IVIG. We finally got approved for SCIG, the subcutaneous injections we will do at home every week. I spoke to the specialty pharmacy and all of our supplies and plasma will arrive on Tuesday of this coming week. A Home Health nurse will come out on Wednesday or Thursday and teach us how to do it. I am very nervous! She is suppose to come for 4 weeks before we have to do it all alone. Her particular dose will pump in over 3 hours and she will do it once a week.

Dr. S is comfortable calling Shelbie's diagnosis CVID- Chronic Variable Immune Deficiency. She does have the non-caseating granulomas which often progress to lymphoma and they are also in her lungs which means she could have sarcoidosis instead but really, they are very similar and share many of the symptoms Shelbie has, so it's not that critical at this point. Because Shelbie has more problems with non-infectious symptoms, she is in a more advanced stage of the disease. The biggest concerns are with her lungs, heart and spleen. Plasma does not slow or stop the advancement of these issues which is unfortunate.

All the same, with surveillance for cancer happening every three months, Dr S said, (I'm paraphrasing...) Your only job is to live a good life. Don't worry about this. Do what you can and enjoy your life.

That is what we try to do. Sometimes, we do it too well and it comes with a price tag.

Thursday was a wheelchair day for Shelbie. She could barely walk 10' because of breathing and fatigue issues. We will get in to the Pulmonologist and see if we are at the stage of needing oxygen yet. We know from rehab that her oxygen saturation numbers drop when she exerts energy and this causes her heart to have to work harder than is safe.

One day at a time...

Sam stayed behind because he can't miss any school and he is already in danger of losing his credits because of absences so far...or so they say. When we got home last night, I asked Sam if he missed me and if he liked being alone and independent?

"Yes. It was fine." He said.
"You didn't even once wish I was around?" I asked
"Well, when it came to eat I wished you were here." His sheepish smile was enough for me to gasp.
Funny boy! I was impressed though. The house was as spotless as I left it and the dishes were done!
So...On we go with life.

Wednesday, April 20, 2016

Today was Oncology. We met with Dr. Shami to go over the official pathology reports. He was great to talk things out. He has a rough plan, though it was a sad reminder that there isn't much they can do. They are considering three diseases in addition to the DC diagnosis.

The first two have been tossed around for awhile now. The second one, not so much but the nodules in her lungs are suspicious for Sarcoidosis and the tissue found in the biopsy also suggests this could be a possibility. At any rate, there isn't much we can do. He said they treat symptoms and aim for control of the disease and comfort.

He is leaning more towards CVID but is going to bring in our Cardiologist and a Sarcoidosis/Pulmonologist specialist to see what we can do about her lung capacity and difficulty she has in breathing and fatigue. He said that if we assume she has CVID, she isn't the very worst case but she is definitely not the easiest either. He recently had a young woman with CVID who had nodules and lymphadenopathy in the same places Shelbie does, including her brain, but she had back to back infections. She had no quality of life and was failing fast. They made the difficult decision to do a bone marrow transplant.

In someone as sick as this young woman, or even in Shelbie it is risky and many don't survive the chemotherapy. For this other girl, she had an amazing response and her disease is gone! He hasn't dismissed the idea of transplant for Shelbie but he feels like we aren't to that point quite yet.

For now, he feels it is very important that we keep up on cancer surveillance and regular scans. This will be done every three months. He will watch all these nodules and enlarged lymph nodes carefully. The complication is that we won't catch cancer unless we do this. She already has the clinic symptoms of having cancer, including night sweats, hot PET scan, pain etc. so it makes for a very difficult situation.

Tomorrow, we meet with Dr. Gundlapalli our Immunologist and get his view point and figure out how to get this plasma going. Shelbie is two weeks late on her transfusion and she is really struggling.

This afternoon was rough for Shelbie. The whole situation is hard but Dr. Shami was so good with her and his humor helped a lot. He wants to see the boys in three months as well. Today just feels like we just ripped a band-aid off and exposed the raw wounds we've been trying to heal over the past few emotional weeks. But...such is life and life goes on.

Sunday, April 17, 2016

It happens, things come undone every now and again. It's hard when we can be cruising along and managing fine and then from nowhere, our resolve dissolves. Such is life.

This was a weekend of dissolve. Shelbie may have over done it this week and she is feeling weaker because of the lack of plasma. Emotionally and physically, she has struggled. Friday night was especially hard, and things weren't much better this morning.

The uncertainty of her situation is extra hard for her right now, for whatever reason. She wanted to run away. We all feel like running away every now and again. So, in an effort to help her, I suggested we run away together.

Just after noon, we left. We stopped for a great and greasy lunch at Frostop then on to our backyard, Yellowstone National Park. Today was National Parks Day so admission was free. We never go to Yellowstone. It honestly isn't my favorite getaway spot but what the heck? There was hardly a soul up there so it was nice to not be stuck in the crowds.

We enjoyed the warm sun and the scenery. We saw the usual sights- buffalo. Lots of buffalo. They roam around like they own the place. If they are crossing the road, it's not uncommon for one to just give up the roaming and park themselves in the middle of the road. They don't seem to have a care in the world. They don't care that they look completely disproportionate, and mangy looking. They just carry on, minding their own business.

We saw massive elk as well. They are majestic creatures and stood off in the distance on the other side of the river. The best sighting was a wolf. I've never seen a wolf out in the wild. He walked right in front of the car. Wolves, on the other hand, look like they care. They look like they are simply just mad, always mad and ready to chew something's leg off. He was headed toward a group of people walking on a boardwalk path. We didn't stick around to see the shear panic unfold when a wolf wandered upon them. That's a certain way to ruin a perfectly good afternoon. Just kidding...I'm sure it ended well- the wolf had his fill! ha ha.

Old Faithful didn't disappoint and we saw quite a few other geysers and hot pots...oh, and a mouse. We saw a mouse.

Nothing has changed but there is something about being away from our little, claustrophobic world, to breathe some clear mountain air and just be together, and that makes a little difference. The only scenery I've really seen the past few months is hospitals, doctor offices and my computer screen so for me, I feel I have a smidgen more energy to face the coming week back at Huntsman.

The lone wolf, ready for a snack of tourists. Thankfully, I didn't appear to be a meaty morsel for him!

Old Faithful...almost as faithful as it use to be but impressive nonetheless

This guy. No rush...

I have no clue where this was in the park but water was boiling fiercely and the steam swirled around us. This picture hasn't be retouched. Cool place.

Thursday, April 14, 2016

Today, I have been thinking about resilience...because I wonder if I have any or not.

I know one thing, Shelbie has it. She has clearly been blessed with many gifts in her life. One such gift was her voice. She has recorded two CD's and a Single. She started singing when she was 12. In 2007, when she received a Wish from Make a Wish, she wished to make a full length CD and distribute it to children in the Oncology/Transplant unit which we did. Just last week, she bumped into the gentleman who spent more than 12 hours with her in the recording studio on that Wish trip. Funny how the past comes back.

The day came when she couldn't sing any more. Her lungs can't support the breath she needs to sing like she use to. So, she developed a different talent. Photography.

She started out with an inexpensive camera, took many online classes, joined photography groups, tutoring sessions and created a business from nothing to something! She has a full service studio and top of the line equipment she has purchased over the years.

Despite the fact she is short on energy and good days, she makes the most of the time she does have. She amazes me that she has a drive to continue to do what she loves. Here are some of her latest creations.

Meet Winston, her little hedgehog with more friends on Instagram than I will ever have in this life or the next! 'Winston Charles the Hedgehog' is where you will find him over on Instagram. Shelbie makes these little vignettes and then poses him. It's pretty fun!

She named her business Dash. It refers to the dash between your birth date and your death date. She captures the moments of birth, death and everything in between. I am proud of her and the way she lives her own DASH.

Tuesday, April 12, 2016

I know I've used the IRS as my fodder for sarcasm and teased about my friendship with 'Greta' from the IRS. Honestly, I was only half joking. She really has been a person I wish I could meet. I'm sure not many people can say they would like to go out of their way to meet anyone from the IRS but I really would. She has been patient and kind. As it turns out, my Offer in Compromise from 2014 was approved! It wasn't approved by Greta but I like to think she was on my side.

The Government has placed a lien on my house and I still have to pay $2000 but they are giving me two years to pay that off so I will manage that. It's way better than $8000 from 2014 and another $8000 in penalties.

I shed a few tears in relief. I'm so glad I listened to the Spirit and treated Greta with kindness because I know that made all the difference, as well as a lot of Heavenly help and some extra faith I tried to muster. Cruelty to one another is cheap and gets us nowhere. It's been one of the most valuable lessons I have learned this year.

My dear Shelbie has also amazed me. She has found this renewed hope in life. I'm so proud of her. She is doing her best to move forward in life. There are struggles every single day. She battles continual pain and fatigue but she is in great spirits. I sit in awe of her tenacity. Today, she even went on a job interview to be a product photographer. Upon arriving home from the 1 1/2 hour interview, she collapsed and may have realized that it won't be something she will be able to do if chosen but I admire her for trying.

Before we knew what we were facing, the conversation came up about what would happen if she had metastasized cancer. I asked her if she would try treatment anyways even though it would probably only make her feel worse and steal the last bit of quality to her life.

She said, "I promised I would endure to the end. Not doing treatment would feel like giving up to me. I would do everything I could to live."

I think she is doing that very thing. I'm certain no one but me sees the strength it takes for that young woman to live. We are nearly a week past due her plasma transfusion and she is wilting fast. I pray that insurance will approve her weekly transfusions soon.

My boys were my saving grace this weekend. I really just wanted to give up last week after some hard things that happened with work. Saturday evening, they 'forced' me to take a 4 wheel ride with them at their dad's house. I hate that kind of thing but they love it. As you well know, they also like to tease me. I hope they will remember me as a mom who was a good sport! Honestly, I loved being with them doing something they love. I didn't even mind when they accelerated so fast I thought I would fly off the back! The boys are working as hard as Shelbie to be happy and suck the joy out of every moment even when it seems there is no joy to be had.

All in all, the kids are fairing well. I'm proud of each of them. I'm going to catch up on pictures from the past couple of weeks.

Spencer and Sam at Snowbird. Spencer was teaching Sam to ski the first time.

Sam on his first run!

A beautiful view of the Salt Lake Temple

Sam, taking a little break from shopping with the girls...His little pains continue.

Spring has sprung in Salt Lake

Sam asked the cutest girl to Prom! She is a doll! She has the sweetest personality and I'm excited for them. Prom will be on Sam's 18th birthday!

Shelbie received this awesome care package from the Shwachman Diamond Syndrome Foundation. We are no longer officially part of this great organization with our Dyskeratosis Congenita diagnosis so I was really humbled when she received this. They are amazing people! I'm glad they have continued to let us be a part of their 'family'.

Sunday, April 10, 2016

Seek first to understand, is a phrase coined by Stephen R. Covey as one of his 7 Habits of Highly Effective People. I started reading his library of books when I was a freshman at college. I didn't just read his books, I studied his every word.

I have spent the majority of my life being misunderstood. I can't remember a time when I wasn't misunderstood. I don't think I have ever really gotten use to it but it is what it is.

When a strange turn of events landed me at a college in the United States I had no intention of attending, I tried to look at it as an opportunity to start fresh. What better time to re invent yourself and slip out from under the stereotypes you were stuck in growing up than to move to another country.

The odd thing is, nothing changed at all. I seemed to attract the same kind of energy of misguided assumptions, narcissistic people and soul-less egos covering me with blanket statements of untruth. It was hard and never ending. Over the years, I have actually had several people I went to school with, who were contributors to some of the shaming thoughts that still replay in my head, find me and apologize for the way they treated me. I felt very humbled by their courage to do that.

Yesterday, I took Sam out for lunch. Just me and Sam. Lately, he's been so defensive towards me, or so I felt. My intention was to put a spark under him about making some hard decisions that need to be made...like now! Decisions like sending in mission papers, patriarchal blessings, college applications, jobs...

As we drove to the restaurant, I opened my Mom mouth but the spirit caught me and the words of Steven Covey- seek first to understand came to mind. So, instead, I told Sam how much I loved him and how proud I was of the way he has chosen to live his life. He has become an amazing young man. He was one of my hardest kids when he was little. He was defiant in every way and hard to manage, even physical at times. I worried about the kind of teenager he would be. As a tender mercy, he has been my easiest, most pleasant teenager. He loves and serves his friends and people around him. He is sensitive and kind. I told him about all the ways I see he is reflecting the light of Christ.

While we ate lunch, I asked, "Who do you feel the most pressure from about serving a mission, me, your dad, your siblings or your friends?"

With only slight hesitation, he said, "You."

I was flabbergasted! I don't feel like I pressure him at all. Again, I opened my MOM mouth to defend myself but instead...I knew I needed to listen. He explained that I'm the only one who seems to care about his future. No one else even asks what's coming next. He translated my interest in his life to be a 'hassle' about making a decision. I was grateful I had the opportunity to reconfirm that I didn't care what his decision was, I just wanted to make sure he felt supported and loved as he made the decision. It's so easy to be confused and uptight but when we take the time to first understand...communication is so much easier.

Friday, April 8, 2016

Yesterday was a half way decent day. Shelbie had a burst of energy and felt much better than she has in the past two months. No hives or itching yesterday so I think that made all the difference. She was able to do her own laundry, clean her room and cleaned out her car that is being sold this weekend...fingers crossed. She still has a lot of swelling and pain but we meet with a surgeon on Monday to see about draining off some lymphatic fluid. Hopefully, if it does have to be drained, it can be done with a needle instead of surgery. I'm hopeful.

Yesterday was also suppose to be her transfusion at the hospital. Donated plasma only lasts in a person's system for 21 days give or take. Each month when Shelbie has a transfusion, they test her levels to see where they are. Her 'trough' has been around 900 which isn't bad. If your IgG, one of the immune factors in plasma, dips to 700 then you start getting into trouble. We have a small window of time before I really need things to get worked out for the new plasma regimen. If she gets exposed to any sort of virus, bacteria or fungus in the next few weeks, it could spark some trouble because she literally has no immune system to speak of. She has very low immune cells, the IgG, IgM and IgA and her white cells are now nothing but abnormal, so we are living on faith and prayer that things start moving.

I'm going to take the weekend to try and get my life to resemble something I can manage again. My friend Amber sent me a little video about a woman struggling with Scleroderma. She had a great attitude and I think it was just what I needed to watch, a little perspective to get me through this rough patch. Shelbie will be with her dad this weekend and the boys will be home with me. Even Spencer is coming home tonight. He and Sam need some mom time. They are both in this strange place where the roads of life are converging and it's unclear which direction they should go next. It's been the hardest to shuffle the various needs of the kids from the physical, important and urgent needs to the emotional and mental stuff that gets moved aside because they seem to be the hardest to work through.

I continue to struggle with my own stuff. I appreciate the people in my life who allow me the privilege to suffer through. The ones who don't judge and make assumptions about my life and the way I am handling my trials. There is no shortage of people who have a negative opinion of me and that really sets me back. I thought I had come so far in not letting the judgments of others hit me so hard. I guess, I'm just tired enough, they do. It makes it really hard to write as well, especially here. It's a vulnerable and courageous thing to share one's story on a public platform. We like to read stories of rise and triumph. Rarely, do people share their story of falling. The ways they trip up. The climb back, the course corrections, the missed opportunities. So it goes.

Well, happy weekend to you. I have been spending my late nights and into the wee hours getting rid of anything in my house that no longer serves me. I had a living room sale because I was too lazy to drag the stuff out to the driveway to babysit. Most of that stuff is gone. I have another huge amount tonight that will take me at least two trips to the dump and thrift shop. I'm excited to live with next to nothing. I hate clutter in my life. The only thing safe is what the kids have in their own rooms. Everything else is out of here.

Tuesday, April 5, 2016

We continue to adjust to life and we continue to try to find some kind of normal to hold on to. It has been much harder than I ever anticipated it would be. I keep wondering what I could have done to be better prepared for what came next. Maybe there is nothing I could have done.

I was visiting with a doctor this morning and he told me about a study that was done at the University of Colorado. He said that only recently, has anyone thought to study the effects of chronic illness on the caregivers. Their findings are grim.

They suggest that 7 years is about the maximum amount of time a caregiver can carry the load that is required of them to carry. Aside from caring for a loved one, they also manage a marital/family relationship, hold down a job, and maintain a household. Oh, and take care of themselves. After the maximum amount of time a person does this day in and day out...they find that divorce rates, unemployment and suicide rise sharply.

I would say, I'm about 16 years past the expiration date of sanity.

Seriously, I feel the weight of my calling as a mother of my children. It's not just caring for one but three. My doctor asked this morning, what would be left of me by the time I face this with my next child and the one after that. I don't know. It will be by the grace and mercy of God that I get through this.

Last week, was just full of disturbing news. My insurance denied the plasma for Shelbie. Dr. G has his people working on that. If they aren't going to cover it, then we need a new plan. We could go back to the once a month but he feels like the side effects we always deal with are complicating her situation even more. He had wondered about breaking the dose up and we would go for 6 hours every other week to the hospital. I know somehow it will work out but it's a hassle.

Also received two collection notices on medical bills I didn't even know existed from Spencer's Salmonella days. I spent three hours on Friday, arguing with the collector, my insurance company and the Utah hospital about the fact that they can't turn me in for a bill I never received. I think I have that worked out but we'll see. Who cares really?

Friday was a red letter day because in all my going back and forth on medical bills with my insurance company, I found out Sam has no health insurance. He hasn't been insured since December! I have no clue who is responsible for that screw up but I just about had a stroke over it. I have a mess of bills from his medical issues last month that were not covered.

I finally took the stack of bills, shoved them in a drawer, slammed it and called it a week.

Sam and Spencer had been planning to spend Spring Break together so Spencer could teach Sam how to ski. Shelbie had a photo shoot she had had booked for weeks that she was committed to down in Utah and, my sister and niece were there for the week from Canada. So, it seemed like I belonged in Utah even though I loathe that drive.

It was nice to be in the warmer weather and nice to spend time with my sister. Shelbie had her struggles but did an amazing job at the photo shoot. The boys enjoyed their time together and Sam did an awesome job skiing for the first time. By the end of the day, Spencer was taking him on intermediate runs and a short black diamond run. Of course, they wouldn't be my boys without a little prank at the end of the day. Spencer called me and in his best saddened voice said, "Mom, can you meet us at the U of U emergency room. Sam hit a tree."
I'm so tired I didn't even react. I said, "Alright. Is he going to live?" He's alive and well. I need to update them on what's funny and what's not anymore. They were disappointed I didn't freak out. They love seeing me get uptight.

This week, we have to figure out Shelbie's leg situation. Her leg just keeps swelling bigger and bigger. She still has hives and still has a lot of pain that now radiates down her entire leg, not just her incision. She gets so frustrated and upset and wants me to fix it. I can't fix it. I have no idea how to make her life better and that is hard for both of us. She can't do many things by herself. She gets tired really fast and just plain worn out and the crummy sweats she continues to have seem to be getting worse. When they happen, she panics. She says it feels like she is burning from the inside out. All I can do is...nothing really. I stand there and watch her and tell her to breathe. I'm useless really.

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"For a small moment have I forsaken thee, but with great mercies will I gather thee...I hid my face from thee for a moment, but with everlasting kindness will I have mercy on thee, saith the Lord thy Redeemer...For the mountains will depart and the hills shall be removed, but my kindness shall not depart from thee, neither shall the covenant of my peace be removed, saith the Lord that hath mercy on thee.

Oh thou afflicted, tossed with tempest, and not comforted! Behold, I will lay thy stones with fair colors, and lay thy foundations with sapphires. And I will make thy windows of agates and thy gates of carbuncles, and all thy borders of pleasant stones...great shall be the peace of thy children. Thou shalt be far from oppression for thou shalt not fear, and from terror for it shall not come near thee." 3 Nephi 22:7-14